About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, May 19, 2012

Greetings to all! Is everyone doing ok? I'm doing well enough, although had a couple little bleeding issues yesterday and a few minor ones earlier in the week, but we're not going to get into that!

I want to post some recent photos of Mothers Day @ Celia and Gregs! Celia just sent me these photos last night - we had gotten Mom those birds @ the Christmas Store in Littleton, CO. Later I thought, she really has so many collectables all over her house, that I shouldn't have gone that route - but I know she liked them! Probably would have just been as happy w/a bottle of Bailey's! :)

Look @ what a great photo this is of Mark and Mom - she is in heaven when she is in his company! They have a very special relationship and we all adore him too! We look forward to seeing Davis soon, as he will be in town next week! Both boys are just extraordinary, they've been (and are) so much fun!

Here is a photo of Mark with his girlfriend Karen Down - she has fit right in and made herself @ home with our family and we all really like her! She made the best cookies for Mothers Day and I ate both of the ones she sent, much to my Marks dismay! Oh well, I assured him there's gotta be a recipe out there where we can get more! I want to say they were choc. chip, but they had a green mint frosting and some crushed pepermint on top - delish!

Here are a couple more photos from my birthday sushi party @ Celia's! The flower arrangement next to me is from Mark Fossum! He is such a doll!

I don't know if you can tell, but on that last photo, Mark is picking up one of those pieces of cake w/his chop sticks and I'm pretending to pour some soy sauce on it! Everything was so good! We always have fun when we all get together and share a lot of laughs! My family makes it possible to deal with this terrible ordeal I'm going through and really give me an incredible amount of love and support! They're the best!

As always, wishing you all great health! Gotta go see what the kiddos are barking at! Take Care!

Cyndi

Turns out they were barking @ some Jehova's Witness - Yikes!

I keep forgetting to post this photo of the beautiful flowers that Mom brought me from her garden for my birthday! I had so many people @ work do a double take and come back to ask me about them!

Saturday, May 12, 2012

Hi Family and Friends! Hoping everyone is doing well, I am for the moment! This will be a doozie blog, because it will involve my last bleed, my birthday and then our CO trip we just returned from!

I won't go into too much detail on the last bleed. A lot like the prior one - It was last Sunday and my moisture alert alarm that I wear clipped to my nightgown sounded about 6:30 a.m. - so I knew I had to get up quick and go to the bathroom. I'm surprised I can hear that moisture sensor, since I can't hear out of my left ear right now, plus - the aircompressor/moisture device I wear on my trache makes a lot of noise! The moisture sensor vibrates as well, so that helps!

Sure enough, having a bleed. After bleeding a bit and having a hard time stopping it, I asked Mark to get an ambulance because it seemed the bleeding was heavy, but soon after he made the 911 call, I had him cancel it, as the bleeding stopped. Still had him take me to the ER to check on my blood level and make sure I had enough in my system in case it happened again. Celia stopped by the ER on her way home from Mass - you can really see the concern in her expression. It is unfortunate that this avm is what has brought us closer, but I love knowing my big sister is really there for me!

I was admitted like last time, to ICU @ Dr.s Regional Hospital. Spent one night in ICU, then was moved to a regular room the following day. We had all made plans to go to Celia and Greg's that evening to celebrate her birthday, but of course I couldn't make it. Same thing happened on mom's b-day dinner - I was in the hospital @ that time as well! Got released on Tuesday, and it was back to work on Wednesday! We were going to shoot for trying to celebrate my birthday @ Celia and Gregs on Sunday, with Mark Fossum preparing shushi especially for me! Mark used to work @ Utopia restaurnt, so he knows how to make great sushi! Nephew Mark had his girlfriend Karen with him, so we all had a lot of fun enjoying everyone's company! I was surprised I felt well enough to go to the Fossums, because I hadn't felt well enough to go out there since Thanksgiving!

On to work the next day and I was just counting the days until my next procedure - hoping Dr. Yakes would work on the troublesome area in the inside left part of my mouth. I was so happy when the day we headed to CO finally came around! While @ the airport we ran into a couple of people traveling with their pets! Didn't catch the name of the Jack Russell, but the other furry one is named George! Both very well behaved! Before landing in CO, the passenger to my left started talking to me. A very nice lady named Jerri that was on this trip to visit her daughter! Told her all about my blog and procedures, so we had a good chance to talk for a few minutes!

The weather was great when we arrived, and I can't wait to get to Swedish Medical Center to get admitted and feel safe in their hands! Soon as I walk into the lobby I'm greeted by one of my favorite techs - Zufan! See photo from past blog. Got the paperwork done in Dr. Yakes office - here I am pointing to a pushpin that symbolizes I'm an avm-er from South Texas! Mark and I headed upstairs to my room to get settled in! See photo of Mark holding towel on shelf in the room. The rooms are very nice, new - so Mark spent each night in my room on the couch! It was nice to relax and enjoy each others company! The nurses came by to get me started on some IV Potassium and antibiotics. Mark went out and got a few things we wanted from the store and picked up a pizza! We watched TV and read and I was just looking forward to getting more treatment done, maybe this would help stop the bleeds already!

Dr. David Pinsinski, (Internal medicine) dropped in to see me - I was admitted under his care first, so he could make sure all my fluid levels were up to par before the embolization the following day. I met him last time Celia and I were in Denver for my past procedure. Remember I said Celia was taking notes the doctor was talking to me about and she was using a Nasa notebook - turns out Dr. Pinsinski's first choice for a profession was becoming an astronaut, so we showed him a signed T-shirt we had brought Dr. Yakes from our fellow extended family member, Astronaut Mike Fossum that he signed for Dr. Yakes. Their motto is "Failure is not an option"! Anyway, I had to laugh @ Dr. Pinsinski's saying that he wishes he could "wave a magic wand" to make the avm go away (see photo), so I wouldn't have to deal w/all the complications! Told him my ENT here, Dr. Zane uses the same analogy!

Several nurses came in and out of my room to say hello or give me meds, so we basically hung out waiting to be taken for the embolization in the morning. It has really worked out well doing things this way - now I don't have to get up super early @ the hotel to rush over and get registered - this way I go directly to the surgical room. See photo of my giving Dr. Yakes Nasa T-shirt!

Dr. Quinn was the anesthesiologist for this procedure - I really like her! She and Wendy (another anesth.) are my favorites - and apparently it was their boss that came to see me after I was back in a room to ask how everything turned out. Gave Quinn rave reviews! Everyone @ Swedish is fantastic and cares so much for their patients! Used to be I woke up in recovery w/my back hurting and wanting something for pain - but lately, I've done great and don't even remember post op! See photo of me after procedure.

One of the evening nurses (Laura) is really funny - great sense of humor and a very good nurse!

Had to get our car rental back by 1:30 pm and our flight didn't depart until several hours later, so we had a chance to relax. I walked past one of those carts displaying phone cases/covers, so I made my way over to look! Got to talking to the young man running his post - Anthony, and we ended up talking about my blog and what I was doing in CO! Got a bright pink cover for my cell phone that I had already lost the original back of and the rim kept coming off, so it was time!

We left our babies in care w/our next door neighbors, Shauna, Ramon and their 10 year old son Kye! I just don't want to have to leave Hanz and Bella in a kennel and since they know the neighbors, it worked out great having them come over to feed them and stay a bit to visit. Shauna was nice enough to take photos of my babies and send them to my cell phone, so that made me feel better! Just knowing she would take them out and let them run around their back yard with their German Shepherd Kaleb was wonderful too - gave them a chance for fresh air and exercise! Thanks so much Shauna - see photos she took! Aren't my furry children darling? So much fun and loving, they make me so happy!

The weather in Houston was bad with lots of lightning, so our flight was held up some. We were supposed to arrive in CC @ 10:05pm and got in @ 11:45 p.m.! The kiddos were happy to see us when we walked in - seems everything worked out well.

Until today. Would you believe I've already had a bleed? Yikes! Luckily, it wasn't a bad one, but I was hoping not to have any more since Dr. Yakes worked a lot in the area w/19 cc's of alcohol! Started w/a trickle and then when I rinsed out my mouth, it bled more. Packed my mouth with paper towel and removed it about an hour later and it bled again. Really, already? Dang! Repacked my mouth and a couple hours later I took the packing out and it was ok. I hadn't eaten anything, and a I was eating some sweet bread, I saw a trickle of blood again. Stop the insanity! So far no major bleeds, Thank God!

Heard another fellow avm-er that I write to on Facebook and she is a patient of Dr. Yakes, just finished her treatments and was already debulked once! I have't seen a before/after photo, but she says it looks great! I want that to be me already, darn it! Oh well. My biggest concern now is just not having bleeds!

Ok, I may tweek this blog a bit here or there in case I forgot to include something. As always through, I'm very grateful for all the Masses for our intention, the prayers, cards, well wishes and all the love and support I get from my family and friends!! Couldn't do this w/out you! One of my new buds from Nurses on Wheels, Robert ... calls and makes appts. to do more paperwork, take my vitals and he is always very entertaining! All these folks help my self-esteem and make it possible to try and live as normal a life as I can for now! Especially my devoted husband Mark and our two furry kids that keep me going and feeling loved! Take care and I wish everyone good health!

Cyndi

P.S. I think I forgot to mention that Mark Fossum sent me those pink roses I took a picture of on the fire place for Mothers Day! He sent that along w/the quiche he made for dinner @ their place! He is such a doll and always makes me feel so special! My family is awesome and has gone way out of their way to help Mark and I with everything we are going through! I was happy that Marks brother Jim took him out to a concert Sunday night! It gives them a chance to visit and for Mark to get away from the hum drum of taking care of me all the time! We are truly blessed with everyones help, prayers and well wishes! Thank you!